About BrAshA-T

100% Voluntary

BrAshA-T is a 100% voluntary-run organisation. Many thanks to the tireless efforts of a most committed Executive Committee:

• Patron - Hon Wayne Swan MP
• President - Krissy Roebig
• Vice-President - Kylie Roebig
• Treasurer - Yvonne Gills
• Secretary - Donna Biddle
• Janine Hobson
• Vanessa Scrofani
• Mike Clahsen

Background

Kristine and Sean Roebig have 4 children - Josh, Stacey, Brady and Ashleigh. In early 2007, Brady and Ashleigh, at the ages of 3 and 2 respectively, were diagnosed with Ataxia-Telangiectasia.

Brisbane based Law Firm Deacons have kindly offered their services on a pro-bono basis to establish a not-for-profit company limited by guarantee called BrAshA-T Ataxia-Telangiectasia Limited. BrAshA-T has also been endorsed by the ATO as a DGR (Deductible Gift Recipient).

In setting up a Charitable Foundation we can start to help fund research currently underway at the QIMR (Queensland Institute of Medical Research in Brisbane, Australia) for this disease. Professor Martin Lavin is leading the research efforts into A-T at QIMR and funding is desperately needed for research into this disease.

Our Long-Term Goals

Our long term goal will be to provide a list of support networks:

1. relieve poverty, sickness, suffering, distress, misfortune, disability or helplessness in connection with the disease Ataxia-Telangiectasia;
2. relieve poverty to people in necessitous circumstances;
3. provide financial and emotional support to the parents of children suffering from Ataxia-Telangiectasia;
4. provide financial and emotional support to children suffering from Ataxia-Telangiectasia;
5. engage employees or volunteers or agents to provide support to both parents of children suffering from Ataxia-Telangiectasia and their children;
6. provide relevant information and broad-based education to sufferers of Ataxia-Telangiectasia, health professionals, carers and the public;
7. develop or provide relevant aids and equipment to sufferers of Ataxia-Telangiectasia;
8. promote the prevention or the control of Ataxia-Telangiectasia in human beings;
9. engaging in medical research into the causes, prevention and treatment of Ataxia-Telangiectasia; and
10. engaging in activities to raise community awareness of Ataxia-Telangiectasia.

As Ataxia-Telangiectasia is such a rare disease (approx 25-30 diagnosed children in Australia), families feel very isolated and alone. Our goal is to change this for families and let them know they are not alone and someone is fighting for their children’s future.